Review of my ITP and advise on possible next steps of treatment

Hi All,

I am a 33 years old male who was diagnosed with ITP (Immune Thrombocytopenia) in April 2022 and since then I have undergone multiple lines of treatment for 3+ years as shown in chronological order below:

1. Prednisone (60mg to 5mg) for 8 weeks.
2. Rituximab IV (Truxima - 720mg dose) for 4 weeks.
3. Promacta (50mg, 75mg) for 5 weeks.
4. Nplate (1mcg/kg to 10mcg/kg) for 3 years from June 2022 till June 2025.
5. Doptelet (20mg/day to 40mg/day) for 5 weeks from June 2025 till July 2025.
6. Tavalisse (100mg - 2 per day) for 3 weeks in August 2025.
7. Received 1 unit of Platelet Transfusion (Plateletpheresis) on August 26th, 2025 as my platelet count dropped to 9000 on August 25th, 2025.
8. Took Dexamethasone 4mg (10 per day) tablets for 4 days from August 26th, 2025 till August 29th, 2025.
9. Resumed back to Nplate (10mcg/kg) on September 2nd, 2025 as it was the most effective treatment to keep my platelet count close to and above 50k for most of the time.

My most recent platelet count on September 2nd, 2025 is 16000.

At this juncture, my hematologist is recommending for Splenectomy as the next step as different lines of treatment have failed and Nplate was not helping with remission effectively even though it's keeping my platelet count above 50k for most of the time. I don't have any active symptoms of bleeding anywhere, apart from slight body weakness or tiredness when my platelet count is low. Also, my other blood parameters are all normal except for the platelet count.

I understand that Splenectomy has only 70% to 80% success rate for platelet remission and post Splenectomy, I may become more susceptible to different bacterial infections and I need to take frequent vaccinations to protect against them. 

Considering I don't have any active bleeding symptoms and the risks tied to Splenectomy, I would kindly need your help in reviewing my treatment and help provide any possible next steps of treatment without Splenectomy.

Looking forward to hearing from you. Thank you and have a great day !

I can't speak of most of the meds you've listed as I haven't taken them.  I have done IVIG, Prednisone and Rituxan.  None of us are qualified to tell you what to do next, we can only suggest.
I had a splenectomy in 2006 and haven't had any serious issues because of it.  The only vaccines I get are my flu shot every year.  Naturally when Covid hit, I was extra cautious and even now when I go into a store, hospital or my doctor's office, I wear my mask.
I did the Rituxan in 2011 and it put me in remission.
I would suggest if you're not convinced about the splenectomy, then don't do it.  It was recommended I do it when I was first diagnosed, but I said no.  It was 2 years before I told my doc I wanted to do it.
Good luck and keep us posted. 

I wonder why the doctor wants to go with splenectomy. I'm guessing its because he knows Nplate will cost over a million dollars for a lifetime. Have to admit that that does sound like he's thinking conscientiously. Its a tough decision though. 

Wouldn't hurt to try papaya leaf extract in this "in-between interim". I don't know that a tough case means it won't work, but maybe some might think that. Maybe a tough case means splenectomy won't work... I know its a lot easier to try papaya leaf extract, than it is to try anything else. Except for the lack of doctor support...

Now, going by my own body, its too bad you didn't throw in a good amount of papaya leaf extract with your recent dexamethasone pulse. Could have made a heck of a difference, going by my own body... Not that I always need dexamethasone. I go months without it, but that's me. 

I should say though, last time, when I took the two together, I got huge bruising, so maybe take the papaya leaf extract directly after the pulse. I  got the huge bruising on the second day, so finished the pulse the next 2 days without papaya leaf extract. Went from 10 to 242 I believe. Not great for me, but then 2 weeks later its 313. Still nothing that high for me, but not bad, obviously. Sorry to go on and on, but I do have to give warnings when I can. Oh, and be careful taking papaya leaf extract with Nplate, since we know high platelets are dangerous, when taking Nplate. But, of course in this case, who knows if anything would put them high... Who knows?

So there you go. You can see how the hematologist thinks. He starts second line with Rituximab because he wants to see remission. Then he tries all the tpo agonist drugs, and still is hoping for remission. After 3 years he thinks its time for splenectomy. This is the formula. 

Of course, it would have been nice if a doctor could consider papaya leaf extract, but yes this is the doctor formula for absolute effort at remission. Just left out one thing...

Interesting stuff.